Happy Chanukah y’all! Three days in to it, can you believe that? Christmas is around the corner and then Kwanza. Seems days fly fast the older one gets. We try to acknowledge all three in our home with holiday decorations which makes it very colorful to say the least. Our friends who cover the gamut also appreciate it so there you go! We just need to get the house decorated🤣. BH is listening to Christmas music and I need to get out the Peter, Paul and Mary CD. This one’s for my Aunt Cyndi who always told me “Don’t let the light go out”. Even after all these years, I miss her greatly. https://youtu.be/h1cRXgDFiSs?si=F0wY7B9o6fJXPYyK
Our newest members to welcome starts with @Rarebleed11.11 Annie is up in Connecticut. Annie experienced an SAH from an 11mm aneurysm. She shares it ruptured while she was on FaceTime with her 11 year old niece. Annie was unconscious for two days! Her wonderful niece was upset saying Mimi would never ignore her texts and phone calls. Annie credits her niece with saving her life and rightly so, I do believe! Annie also shares she loves the beach, sunsets, gardening and the kindness of strangers. She also has a rare blood cancer called Waldenstroms (had to look that one up What Is Waldenstrom Macroglobulinemia? | American Cancer Society). I can’t wait to read more about her story and her awesome niece!
@tdreel is in Virginia. Tara had a clipping procedure on 10/13 though I’m unsure if that was this year or October of 2013, I think this year. She had to go back into the hospital due to hyponatremia. Hyponatremia: Symptoms, Causes, and Treatments (I knew this one!). Tara is having a difficult time recovering. She also loves to sing! We can help with giving suggestions on recovering Tara, we have several members who have had a craniotomy. Come talk to us!
@Debald is in California and was recently diagnosed with a small brain aneurysm. She’s on blood pressure meds and fortunately is overall healthy, active and does yoga as well as exercises. Good for you Deb! Please start a new topic under the General tab and we can help out with what’s going on.
@blanca is down in Texas. Blanca was treated with a stent placement and she’s looking for support from folks who are going through the same thing. Blanca you’ve certainly found the right group, lots of us have had stents used. We can certainly share our experiences.
@GG12 is right here in NC! Hey Marie! She’s had a craniotomy with a clip for one aneurysm but she has another that’s being watched. Marie had a rupture back 3 ½ years ago. Marie is retired and her rupture hasn’t stopped her from returning to painting as a hobby and some traveling with her husband. That’s really awesome Marie!
@C3reyes is the last of the welcomes this week. Carlos is a caregiver for his mother up in Massachusetts. Carlos shares his mother has been dealing with brain aneurysm for 5 years. She had her third procedure on 12/4/2023. He shares that every time she has a procedure, she takes a step back in recovery. It makes me think she may have ruptured initially due to my own experience, but that’s a guess. Yesterday she went to the ER because she thought she was going insane. His mother was experiencing an unbearable ringing noise and it was making her think irrationally. The ER told her it was a migraine with tinnitus but she’s never experienced either apparently. Carlos is wondering if she will ever get better or if they’re just being impatient. Carlos, you will need to start a new topic under the General tab to get the members to respond to your questions and we may have some of our own.
That’s all for the week y’all! Remember as I’ve mentioned use the General tab or even the Support tab which I forgot to mention. Do Not use any identifying information in your user name or anything else for that matter so the nitwits on the internet cannot harass you. We do the best we can, but sometimes things slip through and somethings we can’t get into to fix it, you have to do it yourself.
I want to end this week’s welcomes with another caution. Where we live, there does seem to be an increase with people on the street corners wanting handouts. I had to go to a big box store for a tool and there was a woman who had a sign saying she and her family were in need. I rolled down the window and she said, “bless you”, but then she gave me a bit of a cussing out when I did not give her money as she thought but suggested she go to DSS and apply for aid. Back in the ‘90’s about this same time of year, one of the supervisors where I worked on the night shift took some of us out to eat. There was a guy with a sign that said he was homeless and would work for food. The supervisor offered him a job and housing on the spot! Rather than take the offfer, the guy asked our boss if he was nuts! He went on to say he makes six figures a year panhandling all tax free. Most of it was made the week of December! So please, please be careful with what you have and who you’re donating to, even the big organizations. Make sure you do your research on where the money goes and if it really helps others. Sometimes that donation has to be put towards administrative costs or paying for a website such as the BAF here, The Bee Foundation and Ben’s Friends who provide the moderators here and on other rare disease groups, No, I don’t get paid by the way. I donate my time as do other moderators for Ben’s Friends. Time is as beneficial as money for these groups and for the members. If you can’t afford money, give of your time, with any group, local or internet. Giving something of yourself will definitely help not only you but the others as well. If you can manage an hour or so each week with the organization you choose all year, what a wonderful way to donate! Please be careful and safe this season. Don’t forget to hug the ones you love!